Tuesday, May 26, 2009

Gone til next week...

I will be almost totally offline between tomorrow morning and Sunday evening. What email access (if any) will be limited.

I have to go to a conference - one of my least favorite parts of my job. To make it worse, the day before the conference involves a strategy meeting.

Great. Sitting at a table of people with smooth social skills trying to get a word in edgewise.

It's not that I can't do it. I can. And I'll probably come across as rude when I interact in a group situation (I usually do). But fortunately, I'm an invited speaker and I'm entitled to speak up - I just can't seem to do it as smoothly and ingratiatingly as the NTs dominating the group.

It used to be worse. When I was a grad student, I was attended regular department meetings. I seldom said a word. After the meetings, I'd usually reflect on some issues that were discussed and finally was asked by someone why I didn't bring those reflections into the meetings themselves - while the meeting was still going on.

What I told the colleague was that I was totally clueless as to the signals others were following to know how and when to break smoothly into a free flowing, unstructured meeting. The few times I'd tried it, it was obvious that my own attempts to break in came across as rude somehow.

To my great surprise, I was accommodated without asking. Meetings were then conducted through turn-taking, with people signalling they wanted to speak. It made life much easier as far as the meetings.

In a gathering like this, it's easier. Fellow participants allegedly want my input - so I'm expected to speak and they have to act like they want me to. (wink)

And I don't worry about being being perceived as rude, as long as I don't set out to be that way. As an activist, it's not that bad if people are a little concerned about how badly you'll depart from an atmosphere of civility, solidarity and cohesion.

It will be exhausting, but necessary work. I just wish it didn't feel like the social equivalent of trying to tiptoe my way through a minefield. (to understand that metaphor fully, you should know that my balance is bad enough that I would flunk the standard field sobriety test. Tiptoeing through a minefield is a very very troubling metaphor to me) --Stephen

Monday, May 18, 2009

A Crash Course in Neurodiversity

I've been kind of taking it for granted that most people who seek out this blog know what the heck "neurodiversity" is. Lately, I've been thinking that is a faulty assumption on my part. Luckily, there are two very recent items I can point people two that can give folks a basic grasp of the concept of neurodiversity.

First, I want to point you to this week's edition of Newsweek, featuring my friend and colleague, Ari Ne'eman. Ari is a founder and president of the Autistic Self Advocacy Network (ASAN). Here is an excerpt from the article Erasing Autism by Claudia Kalb:
Ne'eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.
Read the rest of the article. It's worth your time and effort.

Meanwhile, on another continent, my friend Kev Leitch has written a FAQ on Neurodiversity. Kev is a parent of a child with autism. Like many of my contacts in the autism community, we met through the shared experience of tragedy and outrage over the death of Katie McCarron. As Kev's disclaimer clearly states, there are other descriptions of neurodiversity and he doesn't mean this to be the last word. But it's a good place for beginners (and a good read for the rest of us, too).


Proviso: I am not a spokesperson for any other person and/or group. The term ‘neurodiversity’ did not originate with me. What follows is my personal opinion and what I believe the concept of neurodiversity represents. I believe I voice opinions common to many in the neurodiversity group but I may well be wrong. Sometimes I refer to ‘we’ and sometimes ‘I’. When I refer to ‘we’ I think I am repeating the consensus of neurodiversitiy opinion but bear in mind I could well be wrong.

1) Neurodiversity proponents are anti-parent.

False. I’m a parent. I’m parent to 3 kids of whom two are NT and one is autistic. I’ve never felt anyone in the ‘neurodiversity crowd’ is anti me. Kathleen Seidel is a parent. Camille Clark is a parent. Anne Bevington is a parent.

Monday, May 11, 2009

My take on the "cure" debate

I figure that most people who check out this blog are familiar with the conflict between the neurodiversity community (I count myself as a member) and the "cure" crowd.

"Curebies," as they are sometimes referred tend to see "autism" as something that "stole their kid from them," had a single identifiable cause, and (if we only work, spend and wish hard enough) can be "cured" - leaving a "normal" kid in place of the kid with autism. Jenny McCarthy, who was hard to avoid on the talk show network last month, is a prime example of a "curebie."

What do neurodiversity advocates want? Well, here's a brief description from the Autistic Self Advocacy Network (ASAN):
ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. Our activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of autistic cultural activities and other opportunities for autistic people to engage with others on the spectrum.

ASAN initiatives include the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), an active Speaker's Bureau and advocacy in support of autism and disability-related issues such as de-institutionalization and community living supports, educational opportunity and inclusion, employment supports and other initiatives at both state and federal levels.
Notice that there's nothing about "curing" autism in terms of their advocacy efforts.

So what's my take on "cures?"

I think that the pro-cure vs. anti-cure description promoted by cure enthusiasts invites all to ask the wrong questions.

Stepping aside from autism for a bit, let's look at two other famous people pitching for "cures."

Jerry Lewis has spent decades pitching for a "cure" for muscular dystrophy and related neuromuscular conditions (my partner has one of those other conditions). A moment of critical thinking on the part of the public is that any "cure" can only stop a progressive condition where it is - it can't replace lost muscle or effect a change that will help a 20-year-old with Duchenne muscular dystrophy walk. It can only prevent disability of any kind if the cure is administered soon after onset.

Similarly, Christopher Reeve popularized spinal cord research with the promise that he would walk again. Spinal cord injury research is important and promising. It may someday restore some movement and sensation to people to people long affected by their disability. But the only people it will prevent disability in are the newly injured. The idea that any cure will counter the bone loss and muscle atrophy of a person who has spent years without use of their legs was - and still is - a fantasy.

So how about autism and other neurological conditions?

Interestingly, I have a neurological condition with an identifiable cause.

I developed hydrocephalus within my first few months as a result of birth-related injuries.

Left untreated, hydrocephalus will result in progressive physical and cognitive disability - and probably an early death.

So I have this tube in my head that was inserted through the right side of my brain and goes into the ventricles - it drains fluid from the brain down into a chamber in my heart.

So - further disability was halted and I've gotten to live a pretty long and enjoyable life by the most important standards I know - my own.

It doesn't mean that I don't have disabilities.
I am a veritable smorgasbord of neurological "soft signs."

So how do I translate that when it comes to autism? Like this:

The brain is an incredibly complex and interconnected system. Whatever thing or things develop differently in the brain of autistic persons don't operate in isolation. There's evidence in both autism and in brain injured people that the brain will reorganize itself and work in radically different ways than originally designed in its efforts to make up for the injury and/or divergent development.

What does this mean in terms of "cure"? To me, it means that if a single element or managable set of them can be isolated, a "cure" can only operate as such if it happens fairly early in the process.

I don't see any way - given the plasticity and compensatory mechanisms that have probably developed in the brain - that you can "flick a switch" and have a suddenly "normal" adult/adolescent/older child with autism.

So, for me, it's not a matter of being "anti-cure" as much as it is a matter of tilting against windmills. And I should explain that to me, there is nothing admirable about tilting against windmills. Don Quixote thought he was fighting giants, which would be admirable. There is no
point in fighting windmills. Unlike many people, I see nothing romantic about the story - just a sad parable about wasting your energy on the wrong target.

And even if you could alter the brain that radically, would the kid or adult after the "cure" be the same one as the one who previously inhabited the body?

I don't have an answer for that last one. --Stephen Drake

PS - If anyone is curious about what sparked this sudden venture into the world of neurodiversity and the issue of "cures," check out today's entry on the NDY blog.